When writer Flannery O’Connor was diagnosed with lupus in 1950 at age 25, the autoimmune disease was poorly understood, often confused with arthritis. O’Connor braved debilitating pain, immobility, and fatigue with her characteristic humor at times, calling her crutches “flying buttresses.” But she grumbled in a letter about a nurse who patronizingly advised, “Honey, take up knitting, and you won’t notice the pain.” Shortly before her death at 39, she bleakly apologized for feeling “too bad” to type the latest stories she had written.
Some O’Connor scholars believe that the dark, violent images in this seemingly mild-mannered and prim Southern woman’s novels and stories serve as metaphors for the illness that was attacking her body and that ultimately claimed her life in 1964. Nearly 50 years after her death, the prognosis for people with lupus is much better, and people manage the condition and live with it longer than ever before.
“There is more awareness and recognition of lupus now,” says Luz-Maria Hernandez, health educator at the Los Angeles chapter of the Lupus Foundation of America. “Because lupus mimics so many other conditions, it can be difficult to recognize and diagnose.” Greater awareness means that patients exhibiting symptoms of the condition undergo a more thorough medical investigation to rule out or diagnose lupus, she notes.
The chronic inflammatory disease can affect the skin, joints, blood, and kidneys, causing inflammation, pain, and damage. Lupus produces a wide range of symptoms that come and go in flares and periods of remission. The most common include extreme fatigue, headaches, painful or swollen joints, anemia, swelling of feet, legs, hands, or around the eyes, chest pain upon deep breathing, and sensitivity to sun or light, among others. Lupus may also produce a butterfly-shaped rash across the cheeks and nose.
Diagnosing lupus is tricky because it affects multiple systems in the body, requiring a variety of lab tests to detect changes or abnormalities — no single test can pinpoint the condition. Lupus typically develops slowly with symptoms that come and go, which also clouds the diagnostic picture. In addition, people with lupus often minimize their symptoms, hoping the fatigue will pass or the pain will subside.
If lupus is suspected, the medical workup will include blood and urine tests to look for anemia and kidney problems first. An additional panel of blood tests to detect antinuclear antibodies (ANA) is often part of the diagnostic process. A positive ANA test does not always indicate lupus, but this test confirms a lupus diagnosis when three or more common features of the condition are present, such as involvement of the skin, joints, kidneys, lungs, heart, blood, or nervous system.
The Lupus Foundation of America currently estimates that 1.5 million people in the United States are living with lupus. The actual number may be higher, Hernandez observes. The Lupus Foundation is collaborating with the Centers for Disease Control and Prevention on an initiative to provide more accurate statistics on the incidence and prevalence of lupus. “The data will be available at the end of 2013,” Hernandez says.
Most often, lupus affects women between the ages of 15 and 44, but men, children, and teenagers are also affected. Women of color are more vulnerable to the condition, with a two- to threefold greater likelihood of being diagnosed with lupus.
Treatment for lupus generally includes medication to reduce inflammation, suppress the overactive immune response, control symptoms like pain and fatigue, prevent symptom flares, and minimize the damage to organs that lupus can cause. Corticosteroids, antimalarial drugs, monoclonal antibodies, and aspirin are part of the lupus armament.
Many other medications are also used to manage symptoms, such as drugs to control high blood pressure, anticonvulsives to prevent seizures, antibiotics for infections, and bone-building drugs for osteoporosis. People with lupus frequently take multiple medications, some of which produce significant side effects.
The Lupus Foundation is holding a health and wellness symposium called “Lupus: Living and Learning” at El Dorado Park in Long Beach on June 2 from 10:45 a.m. to 1 p.m. The free program is open to people living with lupus, as well as their family and friends. The agenda features expert presentations on nutrition, yoga and other types of exercise, psychology, and spirituality. “It’s a way for people to connect with others facing some of the same issues, and share ideas on what works to improve the quality of their lives,” says Hernandez. To register, contact Laurie Gray at gray@lupus.org or call 310-617-2835.
